childhood cancer

childhood cancer

Saturday, March 17, 2012

Mental Preparation

So, after what seems like ages of waiting for the second round of surgery, we have a date.  Addenbrooke's phoned on Wednesday afternoon, and we are in next Tuesday.  Scary stuff, and took us more than a little by surprise - I think we expected a little more notice.  But, having thought about very little else since I got the call to say Addenbrooke's had phoned my wife, I am quite glad that there isn't much notice with it, as it would just be even longer for me to dwell on it and get worked up!

We had to go to Addenbrooke's to meet the surgeon yesterday - a nice little treat for Letitia's birthday!  For a start, it was the first trip to and from Addenbrooke's in one day without Luke being sick in the car.  It doesn't make sense in terms of time since last chemo, but we have stopped doing top up feeds over the last couple of weeks, as Luke has reached the weight trajectory he was on before getting ill, so we didn't want him to keep piling it on through top up feeds.  That seems to have enabled us to wind down the anti-sickness drugs sooner than usual too.  It all makes sense I suppose - you eat until you are full.  If someone then forces a load more food into you, occasionally you are likely to feel a bit queasy. 

The surgeon explained the operation she is planning, and how it will work based on what the latest MRIs have shown.  Having not really known what to expect before, we kind of expected a re-run of the operation Luke had in August when the tumour was first identified.  Ostensibly it is the same, but as the tumour to come out is much smaller (about the size of a thumb nail now, compared to a whole thumb before) it should be possible to do it without removing and replacing discs from his spine this time - although some bone may have to be removed.  It will requires going right up to the spinal chord, so I have had to sign a form saying that I understand that a key risk of the operation is paralysis.  Personally I think that is better than August, when an expressly stated risk of the operation was death. 

All in all, the operation should be shorter and less invasive than the first time around - but that is not to say that it isn't still major surgery.  One thing which wont be known until the operation starts is whether part of a nerve system has to be removed.  If it does, because the tumour is attached to it, then Luke will permanently have a numb area down one side of his body.  Apparently it is an area where several nerve systems overlap to some extent, so it wont be too pronounced, but all the same, is another long term effect of all of this which means even though he wont remember any of it, Luke will certainly know what a battle his body has been in. 

Luke hasn't been sleeping at all well lately - waking three, four, five times a night.  It is gradually wearing both Letitia and I down.  On top of that, for the last week I have had a cold ad have tried to avoid being around Luke, but today he seems to have picked it up.  Hopefully it wont mean anything as far as Tuesday goes - just a runny most at the moment.  As long as it doesn't build up on his chest hopefully it wont stop anything going ahead. 

As usual, work are being terrific and supportive.  I don't know what will happen overall next week, but definitely need a few days off, possibly nearly all week.  I am extremely fortunate to work in a team where I am not made to feel like that is a problem.  Grated, I will be working extra to catch up in the coming weeks, and not everything that I would be doing at work will get done while I am away - but everything that has to happen, will happen, regardless of how busy others are.  I don't know how people deal with situations like we are in without supportive co-workers and understanding bosses.

While I remember, I have just sponsored my good buddy Rich and a few of his friends, who collectively are running the London Marathon as Team Louis in aid of Children With Cancer UK.  Just in case anyone reading this feel sufficiently moved about children with any form of cancer, then the link to donate to the team is  - I know all amounts will be gratefully received, no matter how small. 

We'll let you know who Tuesday goes once things are stabilised a bit after the op.

No comments:

Post a Comment